My Son Doesn't Deserve Your Stigmatization

My son is 15 years old. Today is his 25th day of residential care following admission to an adolescent psych unit when he was suicidal last month. From here, the only next step available to us is placement in a long-term residential facility for intensive therapeutic treatment and academic support. The closest choice is a 5-hour drive.

As I write this, on the day before Mother’s Day, my heart is broken by the thought of this pending goodbye. How can I leave my son in the care of strangers? How can I come to terms with the reality that those strangers (rather than me, his mother!) are his best chance of someday being able to live independently and happily?

When we adopted this beautiful boy, he was 19 months old. His background was tragic and traumatic. But we believed our love would restore him and our strength would sustain him as he recovered.

Here we are 14 years later. We have failed him. Despite all our efforts to find the best care and meds and schools… No matter how many support groups and books and therapeutic techniques and fad diets we have tried… Regardless of our faith and dedication, our son still struggles, now more than ever, with mental illnesses that no one really understands.

On top of that, as if his illness itself weren’t enough, he is shunned because he is misunderstood.

At our first meal with him, our chubby-cheeked little angel stuffed banana slices and Cheerios into his shirt sleeves before he would eat what remained. He had missed enough meals to be concerned about when he might be fed again. It took three months with us feeding him five times a day before he stopped hoarding food and, even now, he panics if the cupboards begin to look bare.

Physically, he is well-fed, comfortable, safe and secure. The problem is that he doesn’t believe it will last.

That anxiety holds him in a tight grip. It motivates him to do extraordinarily stupid things that are, in his mind, essential for self-preservation. It compels him to be hyper-vigilant in ways that alienate others and prevent him from forming and sustaining peer relationships. It overwhelms and exhausts him as he tries to control his world and everyone in it.

My son also expends a great deal of time, energy and effort on masking that anxiety. He has Tourette’s Syndrome, a tic disorder. He also has OCD, obsessive-compulsive disorder. At times, he obsesses about suppressing and hiding his tics. In the 4th grade, he diverted his shoulder and eyes tics by concentrating very hard, all day long, obsessively, for three straight school days. We knew something was going on because those tics were unleashed at home and came faster and more furious than usual. On the 4th morning, I noticed him limping and drew out the story. He had been redirecting his tics into his big toe where no one could see it. The constant motion there had completely worn away his toenail as it pressed against his shoe over and over and over again.

Since the 4th grade, my son has been in pull-out classes. Even with the extra support of special ed teachers and in-school therapists, he simply cannot handle the stress of a regular school setting. The social pressures of adolescence are dramatically magnified by his unrelenting anxiety.

And then there’s his mood instability. Both his biological parents were diagnosed with bi-polar disorder, which is hereditary. My son has experienced a range of depression, including psychotic depression with aural hallucinations (hearing voices) that scared the hell out of him. He was hospitalized for 10 days when that happened three years ago. As he gets older, the mania is beginning to manifest, too. Neither extreme in moods couples well with the pervasive anxiety.

Last month, overwhelmed by a series of social disappointments (the kinds that all teens experience) and a feeling of hopelessness related to his grades and reputation, my son decided to end his own life. Luckily, we caught on to the plan and convinced him to tell us what he was thinking. He asked for help and has openly accepted the therapy he’s been receiving.

Over the past 25 days, up close and personal as I’m fighting for my son, I have seen how harmful the stigmatization of mental illness is in America. Every day has been a new battle, and every battle punctuates just how limited we are in our ability and desire to understand and treat mental illness.

I wasn’t surprised by the social stigma of those who are ignorant about mental illness like family members who abhor my Facebook status updates and think I should keep my son’s illness a secret. Or the well-meaning friend who asked why we adopted him in the first place. Or a close business colleague who joked that “at least he’s not the latest school shooter... yet.”

I am, however, taken aback by the stigma inside the very system that treats mentally ill people.

There’s the recurring implication that we, as parents, are somehow responsible for our son’s state of mind. It comes through in the questions therapists ask and the judgments they make. It is evident when doctors refuse to listen to parents and dismiss our first-hand experiences and knowledge. It is apparent in the screening calls to long-term care facilities that condescendingly describe parent responsibilities (as if we would abandon him there!).

The treatment of parents is bad enough. But it doesn’t begin to compare to the way the way my son has been neglected and mistreated. Why? Because he is mentally ill and there is a lot of wiggle room when it comes to mental illness. That’s why our insurance company has prioritized the bottom line over the real and immediate needs of my son, forcing us to wage war for placement even though his life was at stake. It’s why the school district drags its heels and delays providing a suitable environment where he can learn and thrive. It’s why doctors over-rely on medications to dull his senses, and it’s why therapists focus on all the wrong things instead of helping him cope more effectively.

There is no known and certain cure for my son. For that reason alone, shouldn’t sympathy trump stigmatization? Shouldn’t there be prolific public awareness campaigns, Susan G. Komen-like events, and an international race to scientifically understand the brain? Shouldn’t there be steady progress toward a cure instead of accelerating growth in the number of people suffering?

Sadly, we’re a long way from overcoming the stigma that restrains progress. This stigmatization of mental illness perpetuates the problem, marginalizes those who are ill, and green lights ineffective treatment and pushback by providers.

Most mental health services operate in the shadows, presumably because of this stigma. The fragmentation of services, providers, resource centers and support systems is part of the problem. Here in California, the problem is exacerbated by deep budget cuts that closed down services and made my son ineligible for county support services. It is virtually impossible to get information about treatment centers online or by referral. Even NAMI, the appointed advocacy group for the mentally ill, is severely lacking in what information it can provide. Last week, I logged 44 phone calls following leads from a dozen resources, and found only three suitable facilities for my son within a 700-mile radius. I’m sure there are more, but I don’t have the capacity or the time to keep digging. He needs help now.

I’m fairly resourceful, and I’m very motivated. But I’m exhausted by the amount of effort it has taken to get help for my son. It’s no wonder that so many people end up “under the radar” because the radar is broken and no one is working diligently enough to activate it.

We all pay the price for allowing this ugly stigma to derail the care our mentally ill family members, colleagues, friends and neighbors deserve. It truly is time to bring mental illness into the light.

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